I'd like to go to the beach, but it's just too hard to ride in the car, then there's sleeping in beds that may be too soft or hard, or long waits in line. I'm sometimes good with a 30 minute ride, after spraying myself numb, but sometimes that is too much too!
Anyone have exciting plans?
I have always wanted to go to Oregon. I have a cousin who said he would take me at the end of summer but like you SK I can't sit in a car very long. I have been in bed alot the last couple of days because of pain. Of course laying around does not help but sitting is painful too. I am so frustrated and tired of crying. I just hope I can make this trip. Right now it is still in the "dream" stage.
The only way I'll be going anywhere is on a cruise. I wouldn't be able to cope with flying or whatever I find at the end of the flight. I can't cope with steps and need a mobility scooter to go anywhere these days. Just need to find someone who also wants to cruise as I don't think I would be able to manage on my own. At least with a cruise you stay put for a while before having to pack up again and boats are flat for getting around.
Dear braylin's gramma,
So sorry to hear you are having a rough time right now! It's never a good time to feel bad, but it always seems to hit me at the worst possible time! I know exactly what you mean about lying about in bed or on the couch. Even then it's hard to get in a good position to actually be comfortable enough to rest and recover. Being inert only stiffens and weakens us too, but the exhaustion and pain drive us down to rest sometimes. Hard to find a balance, when your body is so off balance.
Oregon is beautiful, lush and green with such nice folks, but man oh man does it RAIN! I hope this is something you can make happen, it's important to get to those places that you always wanted to go! Good for the soul!
Take good care of yourself, girlfriend! We're all pulling for you!
Hi PCM,
I hope that you can find someone to cruise with you! Getting away is wonderful, but when you have limitations, then it can change everything. There's a lot to consider and much to do, but I hope that you can find a way to make this happen!
Any particular destination in mind?
Maybe the Norwegian Fjords would be nice. Usually it's for about a week, so not too long if things are a struggle. Better to go for a short time just in case! I have been to Sweden many years ago but never to Norway. They look beautiful in the brochures,
Oh that would be a fabulous trip! Their men are SO handsome too!
Yes, have to go in the summer months though, too cold and dark in the winter.
Absolutely! I don't even like to leave the house in winter! Raynaud's makes it very painful for me to be exposed to cold! I was in the deep freeze today, and keep a pair of gloves right beside it!
http://www.arthritis.org/conditions-treatments/disease-center/raynauds-phenomenon/
It's bad enough having CMT which is starting to affect my fingers. (keep dropping everything). Yesterday I went to the beach with my grandson and was trying to take some photos: my hands were shaking so bad I don't know if they will come out OK. It must be even worse for you.
I only get tremors occasionally, but they are terrifying when they come! We were just discussing those on the Sjogren's site, and how these systemic autoimmune diseases affect the CNS (central nervous system).
I have 2 systemic autoimmune diseases and that means the disease attacks every cell! Complicated at best!